Attention those taking Neurontin for pain

Information about how to manage or reduce the severity of BFS symptoms

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Attention those taking Neurontin for pain

Postby dont on November 8th, 2004, 8:44 am

Hello. I started on 200 mg last week. My doc had some 100 mg samples but he wants me to up to 300 total so he can prescribe just one pill.

It seems to be helping the achey legs for me too.

I'm wondering if any of you have any side effects? I have slight dizziness but I hope it wears off because the Neurontin seems to be helping my pain, anxiety and my mood!

I also want to try to get off the Klonopin and already notice that I am taking less of it since I started the Neurontin. Not much of a change with my twitches though.

I also am still getting pains in my hands especially in the pad below my thumb palm side.

Thanks

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Postby garym on November 8th, 2004, 10:21 am

Karen,

The dizziness should pass with time, or atleast it did for me. Just so you know, I started out at 300mg/day and at the highest was taking 1800mg/day. I didn't have any negative side effects at any dosage with the exception of slight dizziness in the beginning. That said, it didn't really help my twitching and when the insurance wouldn't pay for a higher dosage, i decided to quite it. After weening myself down, I took just one 300 mg pill at night for probably two months and then quit completely.

I hope it helps you.

Take care,

Gary
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Postby Heater on November 8th, 2004, 2:26 pm

Karen,

My experience is pretty close to that of Gary's. I started at 300 mg a day, and initially noticed some lightheadedness (but not quite vertigo) which went away within a week or so. I moved up dosage gradually and was up to 1800 mgs/day but noticed no improvement over the 1200 mgs. Biggest benefits for me were some pain relief, anxiety relief and better sleep. Twitching seemed to improve, but I think it was the reduction in anxiety and not paying much attention anymore that was the biggest factor.

When going off the drug I had trouble getting a good night's rest for a while.

Cheers,
Heath
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Check out the drug monograph

Postby Davey on November 16th, 2004, 2:12 pm

You can learn more about Neurontin at www.rxlist.com

I was on Neurontin for a while and found it effective for my restless legs syndrome (RLS). My father-in-law also takes it for pain for his diabetes-related peripheral neuropathy.
Cheers,

Dave

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Postby Stephanie on November 16th, 2004, 2:17 pm

How do you know if you have rls? I thought I had it a while back but didn't quite fit the profile.
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RLS

Postby Davey on November 16th, 2004, 2:32 pm

How did I know I had RLS? Well, the diagnosis was pretty easy given my symptoms (these are from the RLS website):

1. Urge to move due to uncomfortable sensations in the arms and legs. (My sensations were creepy crawlies, like worms under your skin or like someone has wired your legs and is passing a low voltage current through them).

2. Motor restlessness, expressed as activity, that relieves the urge to move. (I would have to get out of bed and do push ups and squats for 20 minutes or so to get them to go away. Not fun at 1-2 am in the morning!)

3. Worsening of symptoms by relaxation. (I would get squirmy just sitting on the couch in the evening to watch a little TV.)

4. Variability over the course of the day-night cycle, with symptoms worse in the evening and early in the night. (Almost always at night! I couldn't get a good nights sleep for an entire summer in 2002).

Check out the bulletin put out by the RLS Foundation at: www.restlesslegs.org. This describes the symptoms nicely.
Cheers,

Dave

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Postby Stephanie on November 16th, 2004, 2:48 pm

The reason why I thought I had it was because my leg would feel rubbery at night and at rest and therefore uncomfortable. The only thing that would help is getting up to walk around. At the time I did not have the crawley sensation so I didn't think that could be it. Now I do but it's all over twitches which doesn't seem to fit either. Thanks for your response.
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Restlss Leg Syndrome

Postby stevepaul on November 17th, 2004, 6:27 am

Davey and Stephanie. Hi.
With regards to RLS.

I have experienced this syndrome a few times, mainly in my leg but occasionally in my arm. The only symptom I have had is this compulsive feeling to move the affected limb.

The creepy crawly or something writhing about just under the skin sensation, is often a symptom experienced by people withBFS/NMT, I get these strange feelings quite alot. I have described it as, like having a bubble moving up and down my leg just under the surface of the skin.

You both report that your symptoms are more noticeable while at rest, this is a classic statement made by a good number of people withBFS/NMT. I touched on this subject in an earlier post that I did. So it could be that you are experiencing both RLS and BFS/NMT type symptoms at the same time, this has happened to me in the past.

Steve.
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Feeling twitches at rest

Postby carolmerrill on November 17th, 2004, 5:36 pm

Does this sound like BFS? When I am up moving around all day (I teach), I don't feel my buzzing or twitching. I do feel the weakness and pain in my left arm, though. (Perceived weakness, not clinical.) When I sit down, I immediately feel the buzzing ALL over my body, with twitching as well. Twitching is concentrated on my left arm and has been for 6 months. If I were relaxing at home, as my muscles completely "cool down," the twitching and buzzing would completely subside. If I move a muscle, however, my arms and legs will begin to buzz and twitch. As long as I remain still, the buzzing and twitching are gone.

Needless to say all my tests -- EMG, EEG, MRI, every-other-alphabet-soup-test -- have come back normal. Am searching for answers but not sure if BFS is me or not.
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Postby Buzzygirl on November 21st, 2004, 11:15 pm

CarolMerrill,

It certainly does sound like BFS. I have very similar symptoms. Up and about all day, not much problem, but sit down to relax or lie down and the buzzing sensation starts, along with twitches. Another symptom is a subjective trembling sensation at rest. If you are having these symptoms they are most likely BFS related in my opinion. I can tell you I have had similar complaints for a year now. I've had 2 MRI's, 1 EMG, and quite a few different labs drawn. Things like Thyroid function test, B12 level, electrolytes, CBC. Everything has always come back normal. I have been seen by a neurologist a few times over the course of the year, and neuro exams are normal.

I am currently taking Klonopin and Neurontin for my symptoms and it's working pretty well. Twitches are mild and infrequent, and buzzing has been reduced considerably! Thank God.

Good Luck to you,
Karen
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Diagnosis?

Postby carolmerrill on November 23rd, 2004, 7:19 pm

Have you had any doctor try to explain what happened to you? The last neuro I went to said it was a post-viral neuropathy. I had a virus in Feb, then weird symptoms for a few months after, then this started after I had a hysterectomy in May. Neuro said my nerve endings are irritated (also complicated by some slightly elevated thyroid levels) and he put me on Gabitril (similar to Neurontin) to try to alleviate the tremors to force my body back to a normal state. The buzzing and vibration is subdued somewhat, as are the goosebumpy feeling I felt frequently, but I still feel like my muscles are shaky, especially my arms. You can't see my arms shake, but it's like my muscles are "sticky." They don't feel like they move smoothly. Again, someone looking at me wouldn't see it, but I can feel it. I am fine when up moving around, but when I start to "cool down" that's when I can really feel it. I feel the shaky feeling 24/7, except when I sleep.
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Postby carolmerrill on November 23rd, 2004, 7:26 pm

Also forgot to mention that my arms feel "prickly" when the muscles are cooling down. Not that it hurts to have anything touch them, but the fabric touching my skin is weird feeling.
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To StevePaul re: Restless Legs

Postby Davey on December 7th, 2004, 3:35 pm

Amazingly, there is a lot more research on Restless Legs than PNH. If you look at the RLS Medical Bulletin, there are tons of references. See the RLS foundation at this link. My neurologist believes that the two are related and the fact that my RLS acts up when I have flare ups seems to lend some credence to his idea (although I'm just one person!).

I am intrigued about the autoimmune theory. I am going to see my neuro on Dec. 10, and I am going to give him a copy of the Hart et al. (2002) paper. Perhaps he will test me for VGKC antibodies. Regardless, it might be interesting to see if I can get an Rx for prednisone. I know that I'll ask him for an Rx for Neurontin, since when I had a flare up in 2002 it seemed to work for the RLS.
Cheers,

Dave

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Neurontin - English style!

Postby lizzie on January 21st, 2005, 10:46 am

I was really pleased to read your experiences of Neurontin. As a sufferer of BFS for 10 years, diagnosed this year(!) I have just started on a course of 900mgs per day. This has had interesting results - I have been as high as a kite four hours after each pill, much to my families amusement. Does anyone have long term experiences of Neurontin they could share? It seems to be a relatively new idea for BFS in rural England.
Thanks for sharing experiences on this site, it has been invaluable to me!!
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Neurontin - English style!

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